Monday, April 21, 2014

So it turns out that instead of driving up the coast of California with Jeremy for our ten year anniversary, the two of us will be spending our vacation in the ICU with Connor while he recovers from major pelvic surgery. This has not exactly been the best week ever. Bear with me; a lot has happened so this will be a long post.

I got a phone call from the school Wednesday; they thought Connor was throwing up blood again. I missed the phone call because I was taking a shower, so by the time I got down there he was asleep. He woke up on the way out the door and by the time we'd been in the car five minutes he was incredibly pale, shaking and crying, which is an indication in our world that something is really wrong. So I drove him to the ER.

He threw up again in the parking lot, and one more time in the ER bed, so his stomach was pretty empty by the time they took a sample. What came up was pretty dark brown, so it was evident that even if he had been bleeding he was done now, but since he was doing his very best to blend into the hospital sheets and didn't really want to wake up, they were pretty concerned in triage and they decided to admit him and do a scope the next day.

They started an IV, gave him something for nausea and another medication to help protect his stomach if he did have something going on in there, and his color started coming back. He crashed hard and slept through the whole night, though his IV seemed to be having some trouble. Since it kept beeping "occlusion," the nurse put him in an arm board and wrapped it up from wrist to most of the way up his shoulder. This proved to be an unfortunate decision.

Sometime during the night the IV blew and began dripping saline directly into the muscle of Connor's arm. Since he was asleep the whole night I was asleep too, and didn't catch it. The nurse didn't unwrap his arm to check it. Nobody caught it, in fact, until we were downstairs the next morning for his endoscopy and they'd already injected the Propofol, which not only obviously didn't work as it had been injected into the muscle of his arm rather than the vein, but also probably burned like the fire of 1,000 suns. They unwrapped him at that point and discovered the skin was so swollen Connor was purple at the armpit, he couldn't bend at the elbow and the whole arm looked like an overstuffed sausage. The skin was stretched so tightly that when they took the IV tape off the top layer of skin peeled off with it in strips, leaving long swaths of open, raw flesh that looked like burns. It took two days for his arm to finally return to normal size, and the whole inside of his elbow is currently a weepy, blistery mess. Poor little guy.

The good news was that the scope didn't show any evidence of ulcers or anywhere he might have been bleeding, leaving the whole incident a mystery. However, they did discover that the entire inside of his esophagus was swollen and lined with deep furrows, which is indicative of a condition called Eosinophilic Esophagitis (EoE). It's a pretty newly discovered condition so there's not a lot out there about it, but you can find a basic explanation for it here. We're waiting on the biopsy to come back before an official diagnosis, which should take about two weeks, but in the meantime they've started Connor on Prevacid, and they'll be doing another scope in a couple of months to see if that helps. If the Prevacid doesn't improve matters, we'll play the find-the-allergy game until we can come up with a formula (most EoE is food allergy-related) that won't exacerbate the issue. I'm glad they caught this; it's possible that this has been the cause of Connor's dysphagia and if we can get it under control he might be able to eat more by mouth! That would be pretty cool.

Anyway, so we'd had an orthopedic appointment on Thursday that I really wanted Connor to keep, so I told anyone who would listen about it until word got back to our fantastic pediatric ortho doc, who told them just to send us down some time that afternoon and he'd fit us in whenever we came. Connor's PT and I had been increasingly concerned about the little guy's scoliosis, as his curve seemed to be progressing a bit faster and he's been having some trouble breathing if he lies on his right side for too long.

It turns out that Connor has about a 50 degree curve now, which is around ten degrees more than 2012. However, the doctor still wants to hold out and delay his surgery until we're close as possible to ten years old, which is kind of the magic number as far as spinal fusions go. So we have a shiny new referral to pulmonary to monitor Connor's lung function and make sure we're still safe to wait.

One of the major reasons we'll be waiting is because there's a much more urgent issue; one that I was pretty much completely blindsided by as it wasn't even on my radar. It turns out that Connor's right femur is juuuuuuust about to pop out of the socket. This is a pretty common problem with kids who don't walk at all and who have unusual muscle tone. If he doesn't have surgery within the next month, it's likely that in addition to hip displacement he will begin experiencing hip dislocation issues, which can be enormously painful and do a lot of permanent damage. His left femur isn't quite as urgent, but it's on its way out as well.

I swear, it's always something with this kid. He doesn't do anything by halves.

So on May 20th, Connor is now scheduled for a bilateral varus derotational osteotomy with pelvic osteotomy, and probably an adductor lengthening as well. Basically the surgeon will be taking my kid's thigh bones and hips apart, realigning all the pieces appropriately, and then bolting the whole mess back together with what looks like pieces of the Erector Set I played with as a kid. Connor will spend the first week or so in the hospital, four-six weeks in a body brace, and will probably have a 3-6 month total recovery. He'll be out of school for the rest of the year.

This will be the first major surgery Connor has had since he was about three weeks old, and it's by far the most complicated. Jeremy will be able to be here for the first two or three weeks, but then he'll have to go back to his clinicals and the little guy will still be in his brace and almost entirely home-bound for another 1-4 weeks. I'm still wrapping my head around how the heck I'm going to work this logistically; Connor will need around-the-clock care and frequent repositioning, and Eden will still need to do things like eat and occasionally leave the house. I always like a good challenge, but this is kind of ridiculous.

I also feel incredibly guilty because we're going to be putting Connor through some major trauma. It's just not possible for us to explain to the little guy what this surgery is going to be like in a way that he's going to understand. It will be terrifying and extremely painful, and he'll probably be set back a lot in his functional skills, and I really wish we didn't have to do it. But the alternative is worse and the need is urgent, so we'll do what we have to do even if it's really really tough on all parties involved.

So it's likely to be fairly crazy around here in the next few months, as we prepare for surgery and then begin Connor's long recovery. It's not the news I hoped we'd get, but I'm so, so glad we kept the ortho appointment and found out he needed this done. If we'd rescheduled, he might have already experienced a dislocation and we would have ended up with emergency surgery instead, which is never something we'd like to do. I'd much rather have a plan in place and hopefully already have supports lined up for his post-surgery days.

I'll make my plans and figure out how the heck I'm going to juggle everything. In the meantime, I'll be babying Connor's hip to make sure it doesn't pop out of the socket before the surgery, which totally sounds like something that would happen. We do tend to do things in The Most Dramatic Fashion Ever around here, so I don't want to push my luck.

So yeah, not the best of weeks. I'm feeling pretty overwhelmed at the moment, and I'm kind of floundering around as I try to wrap my brain around everything that needs to get done. I really hope this whole thing goes as smooth as it possibly could under the circumstances. The little guy is such a fighter, and hopefully he'll bounce back quickly and be much more comfortable after he's fully recovered.

Thursday, April 10, 2014

Today was a busy day of running errands and phone calls, but I still got the chance to enjoy the return of the warm weather by pulling out the roller skates and going for a long trail skate. I discovered that closing up my pads in a closed gym bag for the entire winter was probably not the best of ideas; I'm glad no one was trying to draft off of me on the trail because they probably would have passed out due to the smell. It was, um, impressive. Derby pads do not smell wonderful under the best of circumstances, and three months of zero air circulation does not improve matters. Trust me on this one.

I still enjoyed myself, though. It felt pretty good to be back on skates!

Anyway, the kids both had a good day. The physical therapist kinesio-taped Connor on Wednesday to try and help him sit up a bit straighter, which would help with his scoliosis. He doesn't mind the tape at all-- actually he kind of seems to like it. It really seems to be working; his posture was much better today and he spent less time slumping over even when he was tired. I'm hoping that a combination of the tape and continued use of the adaptive vehicle (which he can only activate when he is sitting up straight) will help slow down the progression of his curve a bit and also help him be a tad more balanced. We'll just have to see how the next few weeks go!

Eden had swimming today after school. Once she was home we ate dinner and then after Connor went to bed she and I sat next to one another on the couch and read for a while with our mugs of mint hot chocolate. So while it was a very busy day, it had a lovely ending. Mint hot chocolate, books and snuggling with my girl? Can't get much better than that!

Wednesday, April 9, 2014

When Connor's nurse woke him up this morning for school, he started crying, signed "no, tired" and promptly went back to sleep. This was not a wonderful start to the day. I told her to let him doze and then woke him up myself about twenty minutes later. He made a really sad face when I told him it was time to get up, so I brought him into the living room and snuggled with him until he absolutely had to get ready for school. After that he was okay-- apparently morning snuggles solve many, many problems.

He ended up having a good day at school, and then he had an absolutely fantastic physical therapy session. He's really getting the hang of the adaptive vehicle he's been driving around, and it was pretty cool to see him starting to figure out how to stop it at just the right place so that he could see what was going on. He was really interested in the other kids' therapy sessions, and just wanted to stop the car and watch to see what they were doing. It was cute.

Eden had a good day as well; she came home in a really great mood after finishing all her homework at the after-school tutoring assistance program she goes to every Wednesday and finding out that she was the only student who had perfect attendance there. She came right over and gave me a big hug where I was on the couch, and then plopped down beside me to do her reading for the day. We read out loud together every day; she used to read out loud to me for twenty minutes, but we now each read a chapter, which can take considerably more time. She just finished Charlie and the Chocolate Factory, and enjoyed it so much that we've started a second book by Roald Dahl: The BFG. This happens to be one of my favorite children's books of all time, as it is so deliciously dark. Eden and I are both enjoying it immensely.

She's also picking up books and looking through them on her own now; especially the many adoption-related biographies I have on the shelves. Currently she's leafing through Cindy Champnella's The Waiting Child, and while I'm not sure how much of it she's actually taking in, she's spent quite a bit of time on it.

When she first came home she didn't really care for books at all (in Thai or English) because she said the subject matter was boring. Apparently the books that were available to her in Thailand were not very inspiring-- other than the Harry Potter series, which she read in its entirety. Charlie and the Chocolate Factory was the first book we've read together where she was disappointed that the chapter was over and really wanted to know what happened next. I can't tell you how amazing it is for me to watch her begin to fall in love with books.

Good thing I have about 1300 in the house. I don't think she's going to run out of reading material any time soon.

Of course, it probably helps that we have no television reception and her Internet use is limited to two hours on weekdays and three on weekends-- provided she has her homework, chores, and of course her reading with me done. Boredom is a good motivator for reading. Still, I'm thrilled to see her starting to open that door; there are so many wonderful books out there I can't wait to share with her!

Tuesday, April 8, 2014

I'm afraid Connor might be getting sick again; apparently he threw up at school and then kept falling asleep, and he spent most of Eden's swimming practice snuggling on me and dozing. He actually asked to go to bed early tonight, which is extremely unusual for him, and when I ran through the usual routine of "Yes/No Twenty Questions," as we term it around here, he was able to tell me that he wasn't sleepy, but that his stomach didn't feel good. He was out less than five minutes after I put him down.

So hopefully he's not picking up a tummy bug or something. We'll see how he feels in the morning after a good rest. He's been sick more than enough this winter already, thank you very much.

Eden woke up with a sore foot; she managed to accidentally launch herself backwards off the couch yesterday, did a reverse somersault and landed with her foot on the slate coffee table. She started laughing so hard I thought she was crying and rushed over to make sure she was okay. Whoops. Luckily her foot wasn't really swollen at all and she could walk on it and move it without too much difficulty, so I told her that if it became a real issue at school she should go to the nurse and they'd give me a call. Apparently by the end of the day it was feeling much better though, so I didn't hear from her. I'm glad she was alright, and also that she didn't land on her head! I think that may be the end of the lying-backwards-across-the-couch for a while.

Monday, April 7, 2014

I took a nap, a long, leisurely shower (definitely something I didn't get the chance to indulge in over the past week) and then went out to lunch with my mom at the little cafe inside our local nursery, which is always a dangerous sort of outing. My mom is a Gardening Enabler, and whenever we go to the nursery together we feed off of each other and always end up taking home rather more than we set out to find. I got a few starts to replenish the annuals in my herb garden, which I actually needed, and picked up a couple of flowers as well for some of the pots I have on the porch, which I didn't need at all. It was a lovely lunch.

The kids were both absolutely thrilled to be back to school, though I believe both of them were pretty tired by the end of the day. It's tough getting back into regular routines after a week of sleeping in! Hopefully they'll get settled pretty quickly; we've got a very busy couple of months coming up, so it will be good to have them fully acclimated back into their routines before all the craziness starts.

Sunday, April 6, 2014

Friday was an extra-long day of respite care for me since our care provider wasn't able to come last week, so Eden and I had the chance to spend quite a bit of time together. I usually use the respite care for what Eden calls our Mommy-Daughter Day; I think it's really important for us to spend some one-on-one time together every week and I think it's done a ton for our bonding process over the last few months.

So we started off with lunch at our favorite local coffee shop. These lunches are where Eden and I have some of our most interesting conversations. As things have settled down over the past few months, she's starting to ask more and more in-depth questions about the world around her: questions about social issues, politics, morality and ethics.

A lot of them are questions I have a difficult time answering. "Mom, why do some people no have home?" she asked me the other day as we passed a man busking on the street. "Why do people no give them home?" A security camera she spotted in a store led to a long conversation about the motivations behind why people might steal from others. A video about a man searching for his Korean birthparents prompted a discussion about the different paths of adoption and the ethical questions surrounding each. And every time I open my mouth she's listening, questioning, building her own viewpoints about the world based on what I say.

One of the things I didn't consider about adopting an older child was that my words and actions would be actively changing the way my daughter perceives herself and the people around her. I thought her personality and beliefs would be mostly set, and it turns out that just isn't the case; while it's true that some of that is already formed, we've seen astronomical changes in her behavior and world view in the past few months. I think this is the first time she's had the opportunity to think about many of these things. And since I'm the one here every day, and the one she comes to with her big and difficult questions, the person who has the most direct influence over how she's forming her world right now is me.

To tell you the truth, it's terrifying.

The thought that I have that much direct influence over another human being is a very scary thought. Not only am I probably not the best person to learn normal social skills from, but I also don't have any idea what the heck I'm doing. And it's probably not a good idea to give me that much power over anyone or anything, as I have an overwhelming urge to do things like manage to work in bears and/or explosions into every conversation we have. Because bears and explosions are important, okay?

I've started to hear her parrot back to her friends viewpoints that I've expressed over the past few months, and it's very strange to hear things I've said coming out of her mouth. This obviously isn't something I've experienced with Connor (though I believe I have inspired his love of Fraggle Rock and all things dinosaur-related) so it's been a new and strange experience for me.

I've had to start analyzing exactly what it is I'm saying about myself and others around me, because my child is always watching. She's learning how to express emotions from me too, so I have to do way more thinking than I'd ever done before about what it is I do when I'm angry, sad, happy etc. and why I do it that way so I can explain it to her when she asks. I think I'm doing an okay job, all things said and done, but it can be exhausting at times.

I'm really glad that she's starting to tackle some of these more difficult questions; it's something I did at the same age. And I'm going to do my best to have as many of these in-depth discussions with her as possible before she figures out from her peers that listening to her parents is totally uncool. And as she starts putting together her own map of this uncertain, sometimes frightening world, I'm looking forward to navigating it with her as far as she'll let me go.

Thursday, April 3, 2014

Today we spent the better portion of the day with a good friend and her kids down at the Pacific Science Center! For the most part it was a great day and I really enjoyed getting to spend some time catching up with her, though Connor did up the drama by not only having a seizure on the highway going up to Seattle, but then giving us an encore in the elevator on the way up to the exhibits. He ended up with some Diastat on board and dozed during most of the time we were there, including the butterfly house and the dinosaur exhibits, which are normally his favorites. So that didn't make it the most successful post-birthday outing ever. But he seemed to enjoy the little bit of it he saw while he was awake. He especially liked the laser beams, because, well, how can you not enjoy laser beams? I'm pretty sure not enjoying laser beams should be against the law.

Eden had a pretty good time; she especially enjoyed the butterfly house and the insects. She did have some little kid-- probably around five or six years old-- walk up and kick her wheelchair out of nowhere, but I ratted him out to his mom so that was okay. So take that as a warning, kids. Kick my kid's wheelchair and I will totally tattle on you to your parents. Humph.

Anyway, I really enjoyed the espionage special exhibit they had running; it's something I'd like to come back to with Jeremy when he's here visiting next month. It would make a pretty interesting date night, I think. That kind of thing is right up his alley.

We ate some passable-but-nothing-special Greek food at the food court just down the way from the PSC, and then got some fudge to take home. We got caught in the usual glorious Seattle traffic though, and ended up not getting home until after seven, so I missed my choir practice. It might have been for the best, though; Connor crashed pretty much the second I put him down in his bed, so it was probably good I didn't take him over to my parents' house. I really hope he's not getting sick again; he just got over a bug and I would really like him to catch a break.

Wednesday, April 2, 2014

Today was one of those days that I really needed a clone of myself; Eden and Connor both had appointments at the very same time in different parts of Puyallup. Here's where one of the major advantages to adopting an older kid comes into play, though: Eden was able to just walk to the library after her dental appointment and wait there for me and Connor to finish up at physical therapy.

Both appointments went really well; Eden didn't have any cavities and, though she got a bit lost on the way to the library, kept a cool head and in the end was able to make it there without too much trouble. She's really maturing, and I'm very proud of how she handled the situation.

Connor had his third session with the adaptive car he's learning to use right now, and this time I was able to get some video! He wasn't quite as enthusiastic about it as he was last week, perhaps because he had a couple of short seizures earlier in the day, but he still did some excellent driving.

Right now he's using a head switch because his sensory issues keep him from pressing and holding down a button long enough to get more than a foot or so, and he's also only working on going forward at the moment. We're going to muck around with things in the future, though, and see what else we can do to expand his horizons! So without further ado, here's Connor going for a spin:

He's doing so incredibly well with the car that we'll be adding in some occupational therapy specifically to see how far we can take this. This is the first time Connor has been able to consistently move himself independently ever, and it's a huge step for him developmentally. I can't tell you how incredible it is to see him make his own decision about where and when he wants to move.

Mostly, as it turns out, he channels Ariel from The Little Mermaid. He wants to go where the people are. And once he gets to the people, he quits moving and is perfectly content to sit there and look at his hands. If there's too much noise or activity, he also shuts down. I suspect that will improve with time; right now even though the car isn't hard work physically, it's got to be pretty mentally exhausting. As he gets used to the idea that he can get himself around and doesn't have to concentrate quite so hard, I suspect he'll be less sensitive to what's going on around him.

Even though it's difficult, he's obviously having a fantastic time with it, though. He'll stop at intersections and carefully peer down the hallway to see what's going on before moving on down the corridor. He waves to everyone once he gets close to them so they can all tell him what a great job he's doing. And when we go to take him out of the car, he signs "more" and then frantically tries to push the button to run away from us! It's pretty cute.

So hooray for Connor! The eventual goal is for him to be able to move himself around independently with a similar vehicle at home. I can't wait to see what the cats are going to think of this thing!

Tuesday, April 1, 2014

It's been a busy couple of days around here! Yesterday Eden had a friend over to spend the night for the first time ever, which was pretty awesome. They spent some time engaged in the time-honored adolescent traditions of hanging out at the mall and the movie theater, and then they stayed up in Eden's room giggling and chattering away until past midnight. I'm really glad that she's made such a good friend, and that they get along so well!

This morning after a bit of a rough start (I forgot to tell the night nurse that the kids were on spring break, and Connor was unappreciative when he was dressed for school and then discovered that he was not, in fact, actually going) we took off for downtown and favorite local coffee shop. Connor wore his birthday hat proudly, and accepted everyone's birthday greetings with a regal air. He worked his way through a decent amount of whipped cream while the rest of us ate a leisurely breakfast, and then he was presented with a candle-bedecked, freshly-baked cinnamon roll and serenaded by the staff. He thought the icing was pretty tasty!

After that, we ran a couple of errands and while Connor had his quiet time, the girls (Eden's friend stayed on until early evening, which was nice) and I made his birthday lemon bars for the evening. Connor isn't a huge fan of cake, but is madly in love with lemon curd, and I secretly love making the shortbread base for the bars because I get to squish up all the butter, flour and sugar for the cookies by hand and it's tremendous amounts of fun. Once the bars were set out to cool, we took off for Connor's AFO casting-- not the most fun activity in the world for a birthday, but necessary all the same.

Connor picked out the colors for his new AFOs, and this time they're definitely going to be a bit more flashy! He picked his usual blue-and-black foam for the bottoms, but chose a neon rainbow-colored strap. He was so excited about the straps that when he saw them, he gave them a round of applause. I'm glad he's taking more of an interest in picking out his own things out; we'll see if he still likes them when we see the finished product in a few weeks!

After that we went home, my parents came over with a delicious dinner in tow, and we all ate a hearty meal (or in Connor's case, his weight in lemon curd) and then Skyped with Jeremy while we sang the birthday song yet another time and then opened presents.

We ended the day snuggled up on the couch watching one of Connor's new movies. Overall I think it was a pretty successful birthday or at least a tiring one; by halfway through the film I had Eden asleep with her head on my knee and Connor passed out on my shoulder. I think snuggling with my kiddos at the end of the day was probably my favorite part. I can't believe how big they're both getting!

About The Author

I'm Connor's Mom. That pretty much explains everything. I mean, raising the epicenter of cuteness in the universe is tough, but it has its moments, all right.
I should probably mention that Connor has a submicroscopic, subtelomeric unbalanced translocation 46xy der t(1)(1;15)(q42;q26.2)-- an extremely rare chromosomal disorder. He keeps me on my toes!